When Dr. Izzy Lowell moved from Boston to start her new job at Emory University Hospital in Atlanta in 2013, she quickly realized something was missing.
The family medicine clinic she worked with didn’t seem to be serving transgender patients, which seemed unusual to Lowell.
Working with the LGBTQ community had always been something she had been interested in doing, even though her medical school training did not really cover how to treat people on hormone replacement therapy (HRT).
She realized that to serve this population she would have to educate herself and learn everything she could about hormone replacement therapy. Soon she put in place a one-day gender clinic at Emory reserved for those patients.
“Pretty soon patients started driving in from out of state,” she said.
Even in one of the largest cities in the South, Lowell discovered, that medical care focused on this population and on transgender people in particular, was severely limited.
She watched patients crossing state lines every week to visit the clinic.
“I thought, there has to be a better way to treat underserved transgender people from out of state,” she said recently.
Fast forward five years and Lowell found a solution.
Her health organization QueerMed, which she founded in 2017, is an evolution of the one-day clinic she ran at Emory. In part, it operates as a pop-up clinic providing hormone replacement therapy for transgender and non-binary people. Lowell and her team of two nurse practitioners will go to towns in states across the South where she is licensed to do consults and start patients on HRT. Follow-up visits are mainly done via teleconferencing. The clinic recently added some PrEP care, which is the use anti-HIV medication to keep people who are HIV negative from getting infected.
Word of mouth has kept the doctor and her team busy with pop-up clinics scheduled once or twice a month in cities like Chattanooga, Tenn., and Montgomery, Ala., where gender affirming care can be difficult if not impossible to find.
Even in Georgia, a state with the fourth highest population of people who identify as transgender, gender affirming health providers aren’t the norm.
“It’s a huge issue. I had a patient last week call 10 other offices in Atlanta to start hormone therapy. They all said, “I’m not going to do that,”” said Lowell. “If someone has to call 11 different offices in Atlanta for care, imagine what it’s like in small towns?”
Seeking gender-affirming health care
While access to gender affirming health providers is a problem across the U.S., it’s a significant problem in the South, which is home to the largest population of people identifying as transgender in the U.S. New data released in early November by the Movement Advancement Project, showed that the southern states are home to about 567,000 transgender residents. That’s about 41 percent of all U.S. adults who identify as transgender.
Health care discrimination is unlawful under existing federal law and the Affordable Care Act, which took effect in 2014, also prohibits discrimination. Still, the transgender population is historically underserved and face significant barriers in the healthcare system including access to providers and medical staff who are culturally competent. Other transgender people face financial barriers and prejudice. These issues are often worse for transgender people of color, in particular black transgender women who face higher incidents of violence.
It’s estimated that about 23 percent of transgender people avoid seeking medical care for fear of being discriminated against and about 33 percent say they can’t afford healthcare, according to the 2016 U.S. Trans Survey from the National Center for Transgender Equality.
The LGBTQ advocacy group, Campaign for Southern Equality, led a focus group recently to better understand the healthcare needs of transgender and non-binary people in the South. They spoke with 48 participants from North Carolina, South Carolina, Alabama, Mississippi, Arkansas, and Tennessee who reported barriers to finding and accessing affordable care. For instance, finding providers who are available and willing to offer care.
This includes the staff in the waiting room, says Ivy Hill, the community health director for the Campaign for Southern Equality.
“I can’t emphasize the importance of a knowledgeable front office staff,” Hill said. “Sitting in the waiting room and having the person out you as trans, in a rural small town where everyone knows you? Suddenly you are outed to everyone in that community. It cannot be overly emphasized how dangerous that can be.”
Barriers to health
Kayla Gore, a resident of south Memphis, transitioned from male to female when she was 23. Without insurance at the time, she started the process on her own without medical help buying hormones off the street. This resulted in her developing serious blood clots in her legs, a potentially fatal complication that can result from taking hormones without medical supervision.
When she landed a job that offered health benefits she was able to start HRT under the guidance of a doctor.
The process was challenging, Gore said, requiring a lot of extra testing because of her history with blood clots. She was also required to speak with a mental health counselor once a month to be assessed for gender dysphoria – the medical term used to describe a person whose gender identity does not match up with the biological sex they were assigned at birth.
“No one explained to me why I was seeing this person,” Gore said describing the doctor’s tone and demeanor as condescending. She eventually switched to a younger doctor who had a better understanding of how to work with transgender patients, Gore explained.
“We have thought about these decisions for weeks, months, a lifetime,” Gore said. “I always had gender dysphoria. It’s hard to go to the doctor and feel questioned about something you have always known about yourself.”
Gore, who is now 34 and working for the Transgender Law Center and as an organizer for the advocacy group Southerners on New Ground, says that finding a job with health benefits was a turning point in her story.
Without insurance she estimates that HRT in the Memphis area averages between $150 to $175 per treatment, not including the cost of lab tests and additional fees.
“For some people, that’s nothing. For many, it’s impossible,” she said.
Even if the cost isn’t prohibitive, Gore estimates there are only about five doctors in the Memphis-area that offer hormone treatment. The wait to see them is “enormous,” Gore said. “This forces a lot of people to use the black market or go online to start it on their own.”
Louisiana resident, Jules Morales, 26, said he had tremendous support from his friends and family which made it easier for him when he started the gender transition process from female to male three years ago.
A friend directed him to Dr. Brandy Panunti, an endocrinologist, who over the last three years, has led efforts at the Ochsner Health System in New Orleans to offer HRT and health services aimed at transgender people.
Morales was on HRT for a year before he decided to undergo gender reassignment surgery. Unable to find a doctor who could perform the surgery in Louisiana, Morales flew to California after a nearly 8-month waiting period. He remained there in recovery for nearly a month after the surgery.
“I’m lucky. I had tremendous support from my friends and family and it made all of this a lot easier,” Morales said.
The team at Louisiana Trans Advocates receives about two to three emails a day from transgender people looking for help identifying food assistance or other resources in Louisiana.
“About 90 percent are looking for a doctor,” said Dylan Waguespack, the president of the board of directors for the organization.
Most are looking for providers able to offer hormone replace therapy so that they can get a documentation change. As a result, the group keeps a close track on what providers offer these services in Louisiana.
While cultural competency can be a barrier, with providers not necessarily knowing how to work and address transgender people, the bigger issue is access.
“There aren’t enough providers offering transition related care,” Waguespack said.
Gender clinics start opening
There are a handful of health providers in Louisiana that have made strides to improve care for transgender people. CrescentCare in New Orleans opened a gender clinic providing primary care and hormone replacement therapy in 2017. The Planned Parenthood clinic started offering these services in June.
Ochsner Health System, the largest hospital network in Louisiana, has made cultural changes to educate staff and health providers. This includes training employees on how to address the health needs of transgender people.
One of the most significant changes they made was to create an alert in their electronic medical record system that notifies providers when the person identifies with a gender they weren’t assigned with at birth. Using preferred names was an easy practice for staff to incorporate, Panunti said.
They also updated their medical coding to make sure there weren’t any errors and a patient could receive coverage for gender specific exams.
Since making these changes, Panunti said that several primary care physicians in the Ochsner system have reached out to start offering HRT. Transgender patients have traditionally gone to endocrinologists for HRT, but in recent years more internal medicine and family physicians have started providing this care in their practices.
“When you talk about caring for the gender patient it’s not complex,” Panunti said. “But really being an advocate for this population and helping them not feel alone from the walk-in through the parking lot, to the waiting room and minimizing their vulnerability. (That) needs to be at the forefront.”
Click link for more information on QueerMed.
For more information and resources on trans-friendly and trans-competent health providers visit Trans in the South Guide 2019
For more information and resources the transgender community visit GLAAD.
In a previous version of this story, we stated that QueerMed offers primary care services. While the original gender clinic at Emory University offered primary care, QueerMed focuses on hormone replacement therapy and other medical services.